Site links loved ones with medical patients

CaringBridge provides online communication

With his sister-in-law in critical condition after an April motorcycle crash in Muskego, Steve Whittow realized watching a loved one battle for life also brings communication difficulties.

Concerned friends and co-workers in Waukesha County wanted to know of Lynette Salgado's progress. But with medical privacy laws, Whittow's employer was reluctant to help announce updates about Lynette. And when passing along updates verbally, Whittow and his family grew weary of "telling the same story 20 times."

An increasingly popular Web site called CaringBridge, which helps keep patients with extended medical conditions connected to friends and families, could have helped.

Ten years old this month, CaringBridge allows people to create a free Web page to update their condition, and it allows visitors to leave messages of encouragement. ProHealth Care, which operates Waukesha Memorial and Oconomowoc Memorial hospitals, announced they began sponsoring the service this year, and Children's Hospital of Wisconsin has been promoting it since 2001.

"When you're in the middle of a tragedy like this, simplicity is golden," Whittow said, adding that he wished he had known about such a service before his sister-in-law died June 7. Her husband, Ron Salgado, died in the crash.

CaringBridge is open to all people facing health challenges, not just those being treated at an affiliated hospital. The Minnesota-based non-profit was created by Sona Mehring, a Wisconsin native and Web designer.

She calls it "compassion technology," and said users include everyone from cancer patients to wounded soldiers to family members of loved ones in end-of-life situations. Pages are simple to create: they include a main journal, a visitor message board and optional links for donations.

CaringBridge now hosts almost 63,000 users in 50 states and 42 countries, Mehring added. Eighty-three sites list Milwaukee as their home city.

Anne Juhlmann, a family program coordinator at Children's Hospital, said she thinks a lot of adults aren't yet aware of the Web site.

Juhlmann promotes the service to patients, but she also uses it personally.

Juhlmann's 15-year-old son spends about 25% of his time in the hospital receiving treatment for a chronic illness, and the site allows her to update his condition as well as keep a memorial alive for her 8-year-old son, who died in 2005.

"At first, I thought, it just seems so impersonal," said Juhlmann, who created her site in 2004. "People are taking the time to e-mail me and I should answer them directly. But I was telling them the same thing over and over."

She added: "This is not impersonal. It's a wonderful way to connect with people."

CaringBridge, and other services like it that are for-profit, would seem to defy medical privacy laws. But because the site is secured with a password and the content controlled by the patient or a family member, Mehring and other hospital officials in Waukesha said CaringBridge doesn't fall under the discretion of the Health Insurance Portability and Accountability Act.

"No medical records are posted," Mehring said. "The user decides how much to share."

Joe Wilson, an attorney who lives in Whitefish Bay, has used the site since April of last year to update friends and family on his cancer and treatments.

Like many people diagnosed with an aggressive form of cancer, Wilson discovered that people were sometimes hesitant to call and talk to him for fear of saying something rude or redundant.

"(On CaringBridge), if I was pretty straightforward and frank about what was going on, people would ask frankly about it, and that would lead to a good conversation," Wilson said.

Wilson has also been surprised by the number of visitors - about 5,000.

"The guest book is great - people saying things like, 'Joe, I was thinking about you.' Some of those people were folks I'd gone to law school with for years, others were people from elementary and high school. It helps to understand the network of people who care about you even though you're not in weekly or monthly contact with them."